Orabell Barfield is 94 years old and suffers from dementia. She was placed in Spring Arbor more than a year ago when her only son, Henry Barfield, couldn’t care for her anymore.

Henry Barfield has a blood disease and leukemia and is receiving chemotherapy. He lives on a meager disability check, yet he buys supplies for his mother and pays what her insurance won’t pay. As the only child, he would check on her when he could, but he has been in and out of the hospital with his own medical problems. Her house is located in an unsafe area, Henry Barfield said.

“She was walking around the house with a .32 pistol in her pocket,” he said about his mother before she moved into Spring Arbor.

David Ask, 76, has Parkinson’s disease and dementia and resides at Spring Arbor. He gets up in the middle of the night and wanders. He’s fallen numerous times. His wife cared for him until she just couldn’t do it anymore. His only child, Kristen Eckenwiler, has a family and home schools her children.

Both Barfield and Ask are two of many patients with severe dementia or Alzheimer’s disease who, on Jan. 1, will lose hours of care they critically need because the state won’t pay for it.

To comply with changes in federal Medicaid standards earlier this year, the General Assembly provided $39.7 million for people in adult care facilities, but left out group homes and special care units.

Appeals process

Many of the group home residents have started an appeal process. For those who haven’t appealed, Gov. Beverly Perdue allocated, on Dec. 18, $1 million from the budget of the N.C. Department of Health and Human Services. Those funds are expected to cover Medicaid costs to prevent group home residents from being ousted until the General Assemble meets again in January to resolve the issue.

Perdue also proposed the $39.7 million designated for adult care facilities to continue through 2013-2014 and be expanded to include group homes, as well.

But people living in special care units who suffer from dementia and related diseases stand to lose care or may have to leave their facility. Medicaid will no longer fully fund special care services for qualified residents. Facilities with special care units — such as Spring Arbor — stand to lose millions of dollars by either taking the cuts or losing residents.

Randy Jackson, executive director of Spring Arbor in Kinston, said he has seven residents who may be affected by the legislative changes.

“Every one of the Alzheimer’s resident’s that received a letter (to appeal) has been approved for 80 hours of personal care services,” he said.

They’ve been approved based on meeting three of five qualifiers — bathing, dressing, eating, ambulation and toiletry. Through Dec. 31, they would only have to qualify for one.

Page 2 of 3 - But they are currently receiving 161 hours of special care services, and the difference in hours will be about $1,000 a month per resident that Spring Arbor stands to lose, Jackson said.

For smaller facilities, the Medicaid dollars cut in half could put them out of business.

“I don’t think this is something nobody saw coming,” he said. “Now, they’re having to ask for adjustments.”

Life-changing decisions

And families such as Henry Barfield and his wife and the Eckenwilers face life-changing decisions. Although their loved ones qualify for the services, neither family has the money to pay the difference for the hours of care their loved ones currently receive through Dec. 31.

Barfield said he had been helping his mother for a couple of years since his father died three years ago, but her situation worsened, as did his. He got a microwave for her because she was confused when using the stove and he was afraid she would burn the house down. But she had trouble using the microwave and couldn’t read the tiny print on it. He tried cooking for her but he couldn’t get to her house every day.

She couldn’t figure out how to work the television remote control or the heating and air conditioning controls and would call him at all hours saying it was too hot or too cold. He would set out her medications for each day.

“I would come back the next day,” he said, “and the pills would be shuffled around everywhere and she wouldn’t know anything about it.”

Orabell Barfield doesn’t qualify for Medicaid because she owns a house — a house Henry Barfield can’t sell as long as his mother is alive.

Eckenwiler, who resides in Wilson, said her father was placed in an adult home in Cary because he frequently fell. And she was one of the first to sign him up for a new Spring Arbor facility to be built in Wilson. Later, he was transferred to Kinston so he would be in the same company, and the ride on N.C. 58, although further, was easier for her mother than driving to Cary.

When August came and the facility was built, Ask couldn’t be transferred to Wilson because of the funding issues that loom — the new facility isn’t currently taking Medicaid patients.

Ask has stage four dementia. He has frequent episodes of forgetfulness, can’t dress himself or use the bathroom by himself and has to live in a locked unit so he can’t wander away.

When Ask has a doctor’s appointment, his daughter drives from Wilson to Kinston and then to Durham. The round trip is about 300 miles, she said.

Page 3 of 3 - Eckenwiler takes her mother to visit him as often as she is able, but she and her husband are raising their children. Their house has stairs, which isn’t accommodating for her father.

With the funding reducing and, thereby, the hours being cut, she had hoped her father would be closer to home so she could assist with his care.

Eckenwiler said her mother, who lives in Nashville, can’t take care of her husband, and she’s not sure how she could either unless they had someone come in to care for him — which would be an added expense.

“I haven’t thought about what to do,” she said. “I just keep telling my mother we’re going to take it one step at a time.”

Jackson said Spring Arbor in Kinston will not be asking residents to leave when January rolls around.

Margaret Fisher can be reached at 252-559-1082 or Margaret.Fisher@Kinston.com.